Your guide to navigating changes in health and life with X-linked hypophosphatemia (XLH).

About XLH

X-linked hypophosphatemia (XLH) is a rare and life-long genetic bone disease which is characterized by low levels of phosphate in the blood.

While XLH is usually diagnosed in childhood, patients with this condition may experience symptoms in adulthood as well. Notably, some XLH symptoms are too mild and unnoticeable until adulthood [1].

Toolkit Introduction

This toolkit is designed to provide information and resources to help young adults with XLH and their parents/caregivers prepare to transition to adult healthcare. It will also spark some thoughts about other parts of adulthood with XLH – from dating to managing mental health.